Monday, December 07, 2009

scripting a day (or two)

The holiday season has begun. Happy hols to all, and to us a merry appointment.

Okay, appointments. Because, yep, this is also the season when my lads make the rounds of their various doctors. The allergy team (twice, in two cities), the hematologists, the coping clinic, the various labs and clinics that administer the tests that need to be done before the actual chat with the doctor (because the "let's test, and see what turns up and THEN talk" line is not so very useful when you have to wait a month or six to have an in-person conversation), and oh yes. The pediatrician.

Last week, we began. Skin testing for the Toddles on Monday (two boys! tiny room! no scratching allowed!), and pharmacokinetics* for the Eldest on Wednesday. And while the skin testing was mercifully brief, the 'kinetics took - always take - all freakin' day. 7.30 am we put in the pair of IVs, 3pm we staggered (okay, I staggered) out to the elevator. But if I could've scripted them, the two days could not have been better.

We walked into Monday after the Eldest took a firm stance on the question of skin testing: it is, he shrieked, unbelievably painful. He handed out protest leaflets to the Toddles, and had to be taken aside, firmly, and told that it is not okay to freak out the kid before testing. Not going to help. Just going to make him scared, and fear = pain. Got it? Begrudgingly, the Eldest got it.

And forgot it.

I prickled my nails on the boys' backs, demonstrating the test. A stomp and roar later, the Eldest had been collared and exiled to his room, there to brood on the unfairness of the mama and the cruelty of the medical world. And the Toddles, close to tears, snuggled with me and read a book about a kid afraid of needles. I'm going to do that, he told me, pointing to a page. I hugged him, and braced for the morrow.

When the Eldest blinked, looking up from his book. Are they going to do the skin testing soon? he asked. His brother gave him a fabulously incredulous look. The testing is done, he said. And it didn't hurt a bit!

In the corner, I did not smile. Nor did the corners of my mouth twitch. (heh)

And then it was the Eldest's turn.

If the Toddles shone on his day of trial, the Eldest was allowed to stand in one spot, while Children's flung glittering confetti at him. Because this was the day when the Big Apple Circus clowns visited the infusion/boring long test room, and taught the kid a magic trick.
And lo, there was delight.

Where there was a paucity of delight, there was a splattering paint machine, a child life person to keep the paint a-flowin', and nurses who really did not care if we left paint fingerprints on, oh, everything.

and lo, art was made.

The artist in residence stopped by to keep the creative juices flowing, but she was asked to wait a bit: the boys were busy eating the special batch of allergy-friendly french fries that the cafeteria's head chef had made for them. Because, y'know, one must have priorities.

Happily, she understood that. And waited until oh, there were rich watercolors on thick smears of crayon and happy paintbrushing boys.

Oh, had I been able to script this day - this pair of days - it could not have gone better. Children's shone for my boys, and they gleamed right back. We are, I know, absurdly, lushly lucky in the hospital(s) that care for our boys. The reality is the testing, and we'd adapt to that because we must. But the gift is being able to sort of revel in that reality, and to roll around in all of that joy and caring and luxurious resources, IVs, hives and all.

Because it is, after all, the holidays....

* the goal of this test is to see how the Eldest is using his clotting meds. For years, he's had an oddly fast and irregular (but reliably irregular) way of using up his meds, with half of the dose vanishing in 30 minutes, then another half in 2 hours, and so on. By testing regularly, we can adjust his preventative treatment and bleed management to suit him. It's a very good trade-off for a serious PIA day, because in a pinch, I know exactly how to calculate his ability to handle the wallop du jour.

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